It’s not until the final two stages of liver damage that needy Coloradans with the blood-borne hepatitis C virus get access to a life-saving drug with a 90-percent cure rate and an exorbitant price tag.

“You’ve got to be on death’s door before they will treat you,” said David Higginbotham, a Colorado Medicaid beneficiary who contracted the virus 35 years ago while working as a hospital surgical tech. He would take the 12-week medication “in a heartbeat” if the Colorado Medicaid department would cover it, but Higginbotham’s liver “score” is 1 out of 4, and the government insurance plan won’t pay for the medicine until liver scarring has progressed to a score of at least 3.

Now pressure for change is increasing against the state Department of Health Care Policy and Financing, which has restricted access to the breakthrough drug due to its cost. State officials say they must balance the public health issue with the taxpayer expense of paying the prescriptions of the more than 9,000 people with hepatitis C on the government insurance system.

Until a few years ago, the best treatment for hepatitis C included toxic injections that went on for a year, had an estimated cure rate of only 50 percent and were tortuous — the side effects including bone pain, memory loss, depression and nausea. A drug called Sovaldi approved in 2013 was a game-changer: 12 weeks of therapy without the excruciating side effects, and its cure rate is 90 percent.

Estimated cost of the 12-week treatment is $30,000 to $40,000, down significantly from the initial $1,000 per pill — a total of $84,000 — when the drug was the only one on the market but still a potential budget buster for Colorado’s Medicaid department.

The department so far has spent $26.6 million on prescription drugs for 326 hepatitis C patients, an average cost of $82,000 per person, since the new antivirals came on the market, according to a June letter to legislators from Dr. Judy Zerzan, the department’s chief medical director. She estimated it would cost an additional $1.14 billion to treat all hepatitis C patients with Medicaid regardless of how far their disease had progressed.

The interim chief executive of Denver Health Medical Center, William Burman, as well as the ACLU of Colorado, recently sent letters to the state Medicaid department asking for change.

Burman wrote that the drug restrictions are leading to more health disparity and death at Denver Health, the largest health care provider for low-income people in Denver. Hepatitis C patients with Medicare or commercial insurance are “universally approved” for the new antiviral, while Medicaid patients are routinely denied, he said. If the state doesn’t change, treatment policies “may be made in a courtroom, rather than in the exam room,” he wrote.

A federal court ruling eliminated similar restrictions in Washington. Several other states, including Florida, Connecticut and New York, have increased access to treatment without court battles.

In its letter, the ACLU argued that Colorado’s restrictions are illegal because they contradict guidelines issued in November by the federal Centers for Medicare and Medicaid, warning states against imposing “unreasonable” restrictions of the new drug. The 12-week treatment is recommended for all hepatitis C patients — not just those in the final stages of the disease — by medical associations including the Infectious Diseases Society of America.

Colorado’s policy “has the bizarre effect of requiring eligible beneficiaries — who could be treated immediately with few to no adverse side effects — to wait until their disease causes irreparable liver damage before they can access curative treatment,” wrote ACLU legal director Mark Silverstein in the letter also signed by a pro bono attorney from Brownstein Hyatt Farber Schreck and Harvard Law School’s Center for Health Law & Policy Innovation.

But state officials said the federal letter regarding hepatitis C treatment is a guideline, not a mandate.

“The prices of the medications that have been set by the manufactures for hepatitis C have had a very significant and negative impact on this public health issue,” Dr. Zerzan told the legislature’s Joint Budget Committee in December. The high price of the drugs has forced Medicaid into policies that treat “the sickest patients first,” she said.

The majority of people with hepatitis C survive — the disease has a national mortality rate of five in 100,000 people, Zerzan told lawmakers. One study found that in 95 percent of Medicaid beneficiaries with the virus, the disease did not progress during a two-year period, she said.

But physicians said that even though the disease is often slow to progress, prolonging treatment can lead to severe consequences. National statistics show 20 to 30 percent of people with the virus end up with irreversible liver damage, including cirrhosis, and that hepatitis C kills more people than the 60 other infectious diseases reported to the Centers for Disease Control and Prevention combined.

Besides limiting treatment to the sickest patients, Colorado excludes people who have used drugs, including marijuana, or consumed alcohol in the previous six months. The state also denies coverage of the drug to hepatitis C patients unless the prescription is written by an infectious disease physician, hepatologist or other specialist — a primary-care doctor is not enough, which the ACLU argues, limits rural Coloradans in particular.

Physicians and others arguing for new Medicaid policy said curing more people with hepatitis C would go far in curbing the virus, typically spread through blood transfusions or drug needles.

“You can’t just sit back and wait because you don’t know which one of your clients is going to go into cirrhosis,” said Nancy Steinfurth, executive director of Liver Health Connection, a national organization based in Denver.

Higginbotham, who was diagnosed with hepatitis C in 1997, immediately changed his diet and stopped drinking alcohol. He feels like he is “being punished” for taking care of himself because his liver isn’t scarred enough to qualify for the new antiviral. “If it were up to me, I would eradicate hepatitis C from the state of Colorado,” he said.

The idea isn’t that far-fetched, at least medically. “If you could treat every human, and cure them, then nobody would be transmitting the virus and the epidemic would stop,” said Dr. Sarah Rowan, associate director of HIV and viral hepatitis prevention at Denver Public Health. Denver Public Health and University of Colorado’s HIV clinical program cured 95 percent of patients of hepatitis C in 2014 and 2015 by using the new drugs, according to a recent study.

Waiting to treat patients until they have severe liver damage is dangerous, putting them at higher risk for cancer and death, said Rowan, adding that she has patients nearing liver failure who were denied treatment because they had used marijuana in the last six months. “It’s very difficult to see patients week after week who are seeking treatment … and have it be denied,” she said. “We’d really like to be able to treat everyone and to make a dent in this public health problem.”

The state’s drug utilization review board is scheduled to meet Aug. 16 and will hear testimony from people pushing for new hepatitis C policy. State officials will present proposed changes regarding the policy but have not disclosed details. “With new drugs coming on the market, we’re exploring how we can treat more without breaking the budget because these are still very expensive drugs,” said department spokesman Marc Williams.

Jennifer Brown is an investigative reporter for The Denver Post, where she has worked since 2005. She has written about the child welfare system, mental health, education and politics. She previously worked for The Associated Press, The Tyler Morning Telegraph in Texas, and the Hungry Horse News in Montana.

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